The Universe Does Not Care

Spoiler....this is not a happy, uplifting, optimistic post.  Having said that, I haven't blogged in awhile as I wouldn't have been able to write anything more than a series of curse words.

I know I am lucky in so many ways.  I have the most wonderful husband, daughters, parents, and friends I could imagine.

And, I need to remember that because I have not felt very fortunate lately.  I know there are many, many people less fortunate and I am so thankful for what I do have.

But, lately life events have been a reminder that there is no "pass on the bad luck card."  We already have two family members with chronic diseases.  Isn't a husband and daughter with Type 1 enough?  It already takes so much of our time, energy, emotional health.  So many families (and I am truly happy for them) seem to have healthy children.  So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?

The universe does not care.

Courtney is supposed to be my healthy daughter.  The one I don't have to worry about every second of my life.

Life does not work this way.  I know it from my patients.  And, I know it from other families.

But, it is still devastating.

Courtney was likely born with an abnormality in which part of her brain is too big for her skull.  It is pushing down on her spinal cord and blocking the flow of her spinal fluid.  It is creating a cavity in her spine, which if left could result in paralysis some day.  It is creating scoliosis for which she has been such a trooper wearing a brace.

She needs brain and spine surgery.  They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.)  They assure me she doesn't need these things.  But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery.  But, we have seen two surgeons and they both recommend the surgery.  According to one of them "the complications are rare but devastating."  She is totally, completely healthy and with no symptoms right now except for her scoliosis.  It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay.  She will be in pain and scared.  And, she is supposed to be my healthy child.

Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out?  Why can't we have the normal scrapes and bruises of childhood?

Why, why, why do both my children now have a BIG, serious, SCARY health condition????

The universe does not care.

And, this may not be it either.  There is no pass on the bad luck card.  There may be even bigger and scarier things ahead.  And, that is a terrifying thing to realize.  Having two children with these terrifying, horrible things does not guarantee they will not get something else.

So many feelings from Jessica's diagnosis reemerge.  Will I be able to do this?  Will I be what she needs?  How will this affect her?  The anguish, the fear, the defeat.  God, can I do this again?

And, a whole different layer.  Who will care for Jess?  Where is the best place for her?  She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions.  How will this effect her?  And, for the first time since her diagnosis the focus on health is not on her.  She clearly has felt the shift.  Unintentionally, she is clearly trying to adapt to this.

I wish I could just say "pass."  Sorry, we already have our hands full dealing with two of our family members having Type 1.  Nope- we can't do this too.  But, the universe does not care.

Luckily family and friends do.  As we took awhile to learn with diabetes, it takes a village.  We could not handle diabetes well without our Children With Diabetes family.  I don't think we could make it through this without our friends and family.  We are not fun to be around.  We are an unpleasant reminder that bad things can happen to everyone's children.  And, there is no limit to these bad things.  Yet, a handful of friends has come forth and stood by us.  While we have been disappointed in some, we have been amazed by others.  Our parents have been a steady source of support.

And, so I am reminded of the powerful words "I can do this."  Once again, I can do this because I have to.  I don't have a choice.  My family doesn't have a choice.

So, we will do this.

Spare a rose, Save a child

When Jessica was diagnosed with Type 1 diabetes at age 7 my world shattered.  But, because we live in the USA she is now thriving and healthy.  Other parents are not so lucky.  In other parts of the world, little girls just like Jessica do not go on to become healthy, happy 10 year olds.  They die.  And, this is not ok.  Luckily, there are organizations that are trying to help.  This Valentine's Day support Life For A Child.  Spare a rose and save a child.

Just $1 a day provides a child with:

• regular insulin
• quality blood glucose monitoring equipment (meter, strips, lancets)
• essential clinical care
• up-to-date diabetes education materials
• specialised diabetes training for medical staff 

“The scope of what needs to be done is vast.  Diabetes management is complex. While the first step is getting access to insulin, it needs to be followed up with education on managing diabetes, extending sustained care and also improving the quality of care. This takes both time and ongoing resources, so donations such as yours are crucial to the success and longevity of the Life for a Child Programme. Thank you for your contribution.”

Dr Graham Ogle, LFAC General Manager.

Join myself and other bloggers from the Type 1 diabetes world in getting the word out.  This Valentine's Day be a hero.  Spare just one rose, and instead donate a dollar to save a child.

Thank you.

http://bit.ly/SpareRoseSaveChild

http://diabetesadvocates.org/c/spare-a-rose-save-a-child/

It Takes A Village

I don't know how patients do it alone.  I truly think I had Caregiver Burnout last month.  And, I think Jessica had Diabetes Burnout.  We were both just so sick of every check, and dealing with every high and low.  Math tests that had to be taken during recess due to high blood sugars.  Site changes, Dexcom changes, Dexcom alarms, the food scale, guessing at carbs, packing all the ridiculous diabetes baggage for a trip, security fiascos, and the list goes on and on.  I was feeling unusually down, and I think Jess was too.

And then something wonderful happened.  It was time for the Children With Diabetes Focus on Technology conference.  Home.  Friends.  No explanations necessary.  No food scale necessary.  Inspirational people.  And, phenomenally inspirational talks by Sebastien Sasseville and Ed Damiano.

I came back from the weekend refreshed, full of new energy and ideas.  And, Jessica came back happier and less angry.  It truly takes a village.

And, this week when the sneaky "I hate diabetes" moments have snuck into our lives, I have instead thanked diabetes.  I can't believe the wonderful people I have met because of diabetes.  Our circle has expanded in huge ways that never would have occurred had Jess not been diagnosed.  I have watched my T1 hubby become hopeful again, happier, less alone.  I don't think we ever would have attended a CHILDREN with diabetes conference had Jess not been diagnosed.  But, it turns out that Children With Diabetes is the perfect circle of support for ADULTS with diabetes.  We have met so many absolute heros who have been living with Type 1 for 20, 30 years and more.  They are inspirational.  They provide support to our whole family.  They give me perspective.  They lighten my load.  They share a kinship with my T1 hubby.

So many "wow" moments, so many inspirational moments.  Below are just a few of the tweets from the conference:

"Avoid miscarried helping."

"No one is truly independent.  The hallmark of being an adult is knowing when you need help and asking for it."

"Great response to teenagers: how'd that work for you?"

"Teasing or bullying hurts our (parents') hearts more when it is about diabetes."

"Ask your child how they would like you to ask them what their blood sugar is."

"Give your child the gift of struggle."

"Fair is something you buy tickets to.  The rest is called life."

"Preschoolers may think they did something to cause diabetes."

"My daughter is not a mouse.  If she was she would have been cured 300 times by now."

"Pre-bolus and check one more time a day."

"The person with diabetes who knows the most lives the longest."

"We need to change to a prevention minded society."

"You can set the bar, but it's important to know that bar moves."

"It's ok if diabetes slows you down, but don't let it stop you."

And, perhaps the best quote to end with (from Sebastian Sasseville): "Do not regret having diabetes.  Greatness always come in the face of obstacles."

This is a ridiculously hard walk, but you don't have to walk it alone.  It takes a village to raise a Type 1 child.  And, it takes a village to be an adult with Type 1.  Thankfully, that village exists...in the form of a wonderful organization called Children With Diabetes.

Taking the Bird's Eye View

I've been reminded of an important lesson this month.  Take the Bird's Eye View.

After a long period of absolutely amazing blood sugars, this past month brought numbers more out of control than I have ever seen.  None of our tricks worked.  We increased her insulin by insane amounts and still she remained high.  I experienced frustration unlike any I have known, and a sense of helplessness for the first time since her diagnosis.  I finally called her amazing health care provider, who of course was...you guessed it....amazing.  Her first question was "what's going on over there?"  She, too, was surprised by how much Jess's insulin requirement had jumped.  Her theory was a combination of growth and that the honeymoon was definitely over (the period of time when Jess still makes some insulin on her own, before complete pancreatic death).  I had actually thought that this had happened awhile ago, but based on all the equations of insulin needs, etc it seems to have now happened.  Luckily, I already mourned this so there was actually zero emotional impact of her stating it.  And, I was so incredibly relieved to have someone else help out.  My confidence was shot, I was emotionally and physically drained, and I needed help.  Not something at all easy for me to ask for, but I am getting better at it as life goes on.

Jess's healthcare provider made suggestions, and was available all weekend to help (she is truly hands down the best).  Things are still not what they were a couple of months ago (and she's been sick this week which of course does not help!), but they are leveling out some.

But, all of the above is really just boring background.  I realized this past month that I forgot a very important lesson.  Even though diabetes requires so much of our time and energy, especially when it is completely out of control, we can not let it become our sole focus.  I spent too much of this past month frustrated and upset.  There were too many times I forgot to look past all the high numbers on the meter and see the beautiful little girl in front of me.  I worried too much about the high sugars coating her vessels, and forgot to focus on the here and now.  The tragic, absolutely devastating events of last week in Connecticut are a deeply painful reminder that none of us truly knows how long we have.  And, although blood sugar control is important both to prevent short and long term complications, it is perhaps just as important to also focus on the here and now.

I realized this one night while sitting in amazing front row seats at the symphony.  Jess is an avid piano player and had the perfect view of the guest pianist's hands.  The absolute joy on her face throughout the evening was palpable.  Her blood sugar was cruising along in the 300's and yet she clearly was experiencing true and pure joy.  I couldn't help but sit with a crazy grin on my face the entire performance.

Although so easy to forget so much of the time, diabetes is but one facet of my beautiful, amazing daughter.  And, when it decides to revolt and cause deep turmoil, I need to remember to take the Bird's Eye View.  These high numbers will pass, but so will time.  And, I will never get that time back.  Jess will never again be 10 years and 4 months old.

So, perhaps what I have learned this past month is that there are many sneaky ways diabetes can win.  We very carefully don't let it stop Jess from doing anything.  We make sure she is as unaffected as possible by these rough times.  But, she and we need more than that.  We need to remember to focus on the great big wonderful enormity of Jessica, even when part of her decides to create havoc.

Pictures Say It All

This has not been a good week.  Understatement of the year.  Here's the kicker about diabetes.  Just when you think you've got it down---an awesome HgbA1c, knowing the in's and out's of I:C ratios, basal rates, a pro at carb counting...out of nowhere diabetes sneaks up on you and beats you down.  Apparently this time in the form of a pre-adolescent girl entering a major growth spurt.  Her little body is spitting out all kinds of hormones making her insulin needs shoot way up.  And, I mean WAY up.  Despite bolusing her every two hours throughout the night and raising her basal rates faster than I ever have, I have been unable to beat these highs.  Strangely, only at night.  Her daytime numbers have been pristine.  But, these hours are likely when she is spitting out the most growth hormone.  I am exhausted, frustrated, and to be honest a bit scared.  But, tonight I entered the night hopeful.  I received some much needed advice from another T1 mom who has a child that has already been through this.  She recommended a temp basal of +20-30%.  Armed with new tools, I went to bed hopeful.  An hour later I woke to check Jess and was greeted by the lovely 373 (and slant arrow up on the Dex to add insult to injury.)  Sure enough, ketones.  And, the pulled site revealed the dreaded kink.  I wonder if I am the only parent who feels massive amounts of guilt when it is the site that I have placed that kinks.  So, now I will wait for the ketones to clear and her numbers to come down and see what the night will hold.  Just like any mom, I will watch over my sweet girl.  And, I will take comfort in one of my favorite quotes: "Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain."  No matter what kind of blood sugars this night brings, tomorrow is another day, and another chance to dance in the rain.

Blood sugars in the steady 200-300's despite waking every 2 hours to check and bolus, and adjust basal rates.

An exhausted Jessica even though she was able to sleep through most of the checks.  Constant highs don't feel good.  Note the "I Can Do It" bracelet.

Tonight, a kinked site.  Site changes at 10 pm- no fun for Jess, or for mom who needs to stay up to make sure the ketones clear.

Nope- that site is not supposed to be shaped like an upside down "U."   And, despite the fact that I know these things happen, the mommy guilt is there as I am the one that put in this sit tonight.

Work

Diabetes is winning this week.  It is hammering me.

This week has been yet another good reminder to me that patients can try their hardest, give 200%, and still not achieve the outcomes that physicians have been trained to desire.

On the surface, Jessica has had a "horrible" diabetes week.  She's been in the 200s more than she hasn't.  And, yet, I have had no sleep.  I have worked my ass off trying to get her numbers under control.  She has undergone extra site changes as I have had to rule out failed sites as a cause of these high numbers.  In short, we have put forth extreme effort and have absolutely nothing to show for it.

Patients often drop off logs for physicians to review.  It is so much about numbers.  HgbA1c, LDL, blood pressure, weight.  Yet, physicians can forget what is going on behind these numbers.  Checking blood sugars is work.  Trying to eat correctly is work.  Exercise is work.  Staying up all night multiple nights to try to achieve control is work.  Even "just" remembering to take a pill every night is work.  A patient can work incredibly hard, but a logbook filled with 200s will not reflect this.  Is there any acknowledgement of this work?

Perhaps the patient who seems to have "given up" is just sick of expending so much work and getting so little positive feedback, or seeing no reward of their effort.

Tonight I was tempted just to sleep.  I have had a ridiculously hard week at work, the husband is once again working nights on inpatient, and despite staying up all night I have not been able to get Jess's numbers out of the 200s.  It would be so easy to give up.  After all, living in the 200s won't hurt her much in the short term.  It is so easy to see how this mentality can win.  And, I have knowledge, drive, resources, support.  What about the patient alone, or who can't afford the strips for repeated checks?

We're losing at this number game this week.  It is not due to any lack of work.  In fact I am so completely exhausted and frustrated that I am near tears.  I secretly want to give up for a short while.  I am close to diabetes burnout this week.  We "should" be able to control this.  The basal rates and ISFs "should" follow the rules.  But, she's growing and so they are not.  Human bodies are not perfect little experiments where all factors can be controlled.  I am doing my absolute best, but her body seems to randomly be spitting out growth hormone or cortisol, or some other unmeasurable substance that shoots her blood sugars up.  And, despite rage bolusing, multiple changes to her basal rates, and complete exhaustion on my behalf I am not any closer to achieving blood sugar control then I was three nights ago.

Yet again a good lesson in humility for me.  Patients can work so hard behind the scenes.  It needs to be acknowledged.  Even if HgbA1cs and LDLs, blood pressures, and weights are not "at goal," it does not mean there has not been work.

A Fly on the Wall

I have often wondered what your days at school really look like.  How do you do it?  What does it really look like?  I hear random bits.  The girl that teased you, the test you had to take during recess, the pride when you know you made a good choice.

Yesterday I shared part of your day.  Your school had classroom visits, and I sat and watched you like a fly on the wall.

I didn't know that you wear your diabetes bag on your back the entire day.  I wonder if it is uncomfortable to sit with it on your back as you lean against your chair.  I see you go to the front of the class to write on the Smart Board and it is there-on your back.  As your mom, it seems to scream out "my daughter is different...she is not like the rest."  I ask you about it at lunch and tell you that you could take it off and put it on your chair.  "No, mommy- I want it on my back- I can't lose it there-it has everything I have to have."  I realize this bag represents your safety.  As long as it is on your back, you can take care of yourself.  In a world that I don't think you fully trust to take care of you, you seem to know that as long as you have your bag, you will be ok.

I watch you check your blood sugar before the math quiz.  You miss all the verbal instructions the teacher gives as you check.  You smile as you hold up the meter to show me the "104."  I remember you telling me how the teacher sighs if your blood sugar is out of range, and how much you hate giving up recess to take the quiz then.  I find myself once again wondering if the right thing to do is really allow you to reach your full potential by not taking tests when your blood sugar is high.  And, then I think what a ridiculous question that is.

I sit with you and your friends at lunch.  I see their lunches.  "See mom---see what they all have for dessert?" you ask as you hold up your one small peanut butter cup.  I am so sad as I think "but their pancreases work, and if they eat these desserts they will still be able to learn well...while you will be in a hyperglycemic fog."  I tell you I do see, and I promise to myself that I will try to give you a bigger dessert but realize that something else will have to go.  Your friends may be able to eat a 100+ gram carb lunch, but we have seen time and time again that the best I:C ratio does not hold with high carb meals.  I can't explain this to you.  And, I shouldn't.  But, I find myself hoping that someday you understand why your dad and I have done so many things.

And yet, I think you are happy.  You hate diabetes most days.  And, the lows and highs are relentless.  You still fear pump and dexcom site changes.  And, you do get teased.  But, you also have found good friends.  And, above all else, you are still just a ten year old girl.

I am so proud of you.  Every single day.  And, as I sit like a fly on the wall I almost tear up with this pride.  I know deep in my heart that this is YOUR life story.  I may have suitcases full of my own emotion and baggage about your diabetes, but they are mine alone.  You are living your life and triumphing.  I know diabetes has made you stronger and healthier than most your age.  I see how much more empathetic you are towards others that also have their own diseases to manage.  And, I know that because of diabetes you will do great, amazing things.  You are my super hero, Jess.